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The PMD Foundation
Vol. X Issue 3
Fall 2015
Newsletter
Striving for a World Without PMD
Michael Kai Bishop — Richland, WA
Michael Kai Bishop was born by Caesarean section on June 23, 2012, the first born of
Michael and Katy Bishop, 2½ weeks before their first wedding anniversary. Kai spent the
first three days of his life in the NICU receiving antibiotics because of an infection his mom
developed during labor. When he was born, his parents knew he would be special as he
shared the same foot condition as his mom, calcaneovalgus/vertical talus .
At 6 weeks old we started weekly trips up to Seattle Children’s Hospital for serial casting
to fix his feet. Because he was in whole leg casts, he wasn’t able to do tummy time so he
wasn’t hitting milestones. But, we weren’t concerned because we figured once his casting
was done he would catch up. After 10 castings, Kai developed a severe allergy to the casting material and treatment for his feet was stopped while we dealt with his allergy issues,
which included severe eczema.
At 8 months old, we took him back up to Seattle Children’s Hospital to see one of the
neurologists. He determined Kai needed an MRI so one was scheduled for the following
week. Little did we know how much our lives would change from one little test.
Within an hour of Kai having completed the MRI, we received a call from the neurologist. The MRI came back showing a severe lack of myelin; equivalent to that of a newborn. That’s when we heard the three words that would change our lives forever:
Pelizaeus-Merzbacher Disease. The doctor wasn’t completely sure that’s what it was but
sent off Kai’s blood for genetic testing. Six weeks later it was confirmed: Kai had a point
mutation on the PLP1 gene (W181C). Kai had the disease. We were devastated. And to
top that off, there was only one other confirmed case of his particular point mutation, so
we had no idea what was in store
When we met with the neurologist a week after getting the
genetics results back we then were hit with more news…the doctor did not expect Kai to live past his first birthday. Three
months! Three months is what the doctor told us we had left with
With Daddy
our son. We were set up with palliative care and sent home. (We
later found out I was a carrier and assume I am the de novo as there is no previous family history of PMD.)
When Kai was 13 months old (a month longer than doctors expected Kai to live) we
went to the PMD Symposium at Alfred I DuPont hospital to learn all about this disease
that we had never heard of before. While we were there we were able to have Dr. Kamholz look at Kai and he gave us our first glimmer of hope. After examining Kai he said
Surrounded by toys Kai appeared to have more of the classic form than connatal, meaning there were a whole
list of things that Kai could potentially be able to do that we were told were never going to
be a possibility. We came back more determined than ever to make sure Kai had
every possibility to do as much as he could!
As far as Kai’s “medical interventions,” he has none. Doctors wanted to tube
him at nine months but Kai proved he could eat (and gain weight) on his own.
Within five months, he was discharged from palliative care weekly checks. His
grandma and I do physical therapy with him as opposed to early intervention or the
school district, which we initially did for 6 months. He is only scheduled to see his
pediatrician once a year because he is doing
so well. He is medication free. The only
thing he is given is redox signaling molecules
(Asea) which allows his body to do what it is
meant to do .
Kai is the happiest, sweetest, most loving
boy around. He loves being a big brother to
his sister, Leilani. He is growing by leaps and
Therapy with Grandma
bounds and getting stronger and stronger
every day. He doesn’t crawl, walk or talk (in
words) yet, but he is extremely “chatty” and is always on the move. He
With Sister Leilani
loves to observe everything around him, go swimming, and especially
spend time with his grandma. He has totally changed our lives while truly writing his own story.
Katy Bishop
Kai’s Mom
In this issue
Kai Bishop
1
Foundation Revisions
2
We are Family
Pediatric Palliative Care
2
Hatchback Shoes
2
3
Summer Events
Playgrounds for Everyone
Fall Recipes
4
Trick or Treat for PMD
Fundraising
5
Donating &
Contact Information
6
Board Members
Jeff Leonard Board Chairman
Trustees
New Jersey
Don
Hobson
Alicia Lennox
Becker
Board
Chairman
Georgia
Robert
Candelaria
Delaware
Texas Case
Tina Garbern
Tina Garbern Case
California
California
Patti Daviau
Daviau
Patti
Indiana
Katie
Harter
Rob
Gasperetti
New
Jersey
Treasurer
Don Hobson
New
York
Delaware
Gina
Gina Jones
Jones
Illinois
CarlosJeff
Labrada
Vice-Chair
Leonard
California
Secretary
Dave Manley
New
NewJersey
York
Dave
Doris Manley
Parker
Texas
New
York
Ed Skelly
Doris
Parker
Illinois
Texas
Laura Spear Secretary
Ed Skelly
New
Jersey
IllinoisTreasurer
Geoff Toman
Georgia
Laura
Spear
New Jersey
Volunteers
Rob Gasperetti
Volunteers
Doug
Harter
Kathy Kanous
Kanous
Kathy
TaraBeneway
Veal
Jennifer
NEWSLETTER
Kathy Kanous Media Manager
Contributors:
Katy Bishop
Melissa Vandenberg
PMD Foundation Revisions
You will soon see some changes in The PMD Foundation website and logo. Under the direction
of Carlos Labrada, the current Vice-Chairman, work is being done to bring our technology into
the future. Stylized, more modern versions of the logo have been created (see left and right)
and a more interactive website, with added capabilities, is on the horizon. We will also stop
“snail mailing” our end of the year Newsletter and make it available online (like the others
throughout the year.) We will try to make sure we have email addresses for everyone who
currently receives the mailing. If you hear of someone who hasn’t provided a current email
address , please ask them to sign up at our website http://pmdfoundation.org/?page_id=212
We Are Family
The PMD Community is like a family, spread across the country and around the world. The common bond is not blood, or heredity,
but a strong empathy among those who are experiencing a life complicated by this dreadful disease. There is a connection here that
others often can’t relate to. The stories told at PMD Family Conferences, in Symposiums and via Facebook resonate with the appreciation these families have for being a part of a group where their problems and concerns are shared by others. Questions might be
answered by those who have walked the path before. It’s comforting to know that one is traveling the same road as others, even if
they are miles and miles away. If you know of other individuals who are dealing with PMD, but are not members of The PMD Foundation and who do not participate in the benefits of available social media groups, encourage them to join. It’s a dark, lonely trip
when you’re by yourself, let others help share the load and serve as a beacon of light. If you’re not familiar with any of these sites,
make it a point to visit them now:
http://pmdfoundation.org ,
www.facebook.com/ThePmdFoundation,
www.facebook.com/CurePMD,
www.facebook.com/groups/PelizaeusMerzbacherDisease,
www.facebook.com/groups/2496948267
Pediatric Palliative Care is not Hospice
Palliative care has gotten a bad rap. Most people equate it with hospice (or end of life care), but it’s not that limited, particularly
in the case of Pediatric Palliative Care. Incorporating a palliative care team into your child’s health care regimen is not a sign of
“giving up”, “just waiting for the inevitable” or “withholding treatment or care.” The website, getpalliativecare.org does a wonderful
job of explaining all the benefits of support from a palliative team for chronically ill children and their families. Their very apt description:
“The main goal of pediatric palliative care is to allow your child to grow and develop through childhood in the face of serious
illness. Using a team approach, pediatric palliative care helps your child and family caregivers cope with the challenges of illness and
hospitalizations by relieving the symptoms of the disease or treatments. The team also focuses on supporting the people around your
child, including siblings. They provide your child’s medical team with resources for medical care at home or closer to home. They also coordinate care among your child’s many doctors and improve communication between you and the primary medical team. A pediatric palliative care team helps whenever and wherever needed, whether in the hospital, at home or in the community. How palliative care can help often depends on how your child is feeling. That’s why having access twenty-four hours a day, seven days a week
to a team that knows your child is key. ”
The typical team includes a doctor, nurse practitioner, nurse coordinator, social worker, chaplain (or other religious figure) and
possibly a child-life specialist, psychologist and rehabilitation techs. The palliative care team should work with your primary physician
or pediatrician to act as an extra layer of support and information. They can provide additional contact for parents who are dealing
with chronically ill patients at home. Not every PMD patient requires regular medical contact, and fortunately many of them can go
rather long periods of time without medical incident. However, when issues arise, it is good to know there is a supportive team familiar with the patient and their history. Read more by clicking here.
Most palliative care is provided through hospitals, or other health care facilities, but can extend to the child’s home via home
nursing and phone contact. If you are interested in locating palliative care for your child, you can click here for a link to a provider
directory in the USA.
Hatchbacks - Shoes for children with AFOs
This is not an endorsement of this product by the PMD Foundation (because we
have not tried these shoes ourselves) but rather a suggestion for all those parents
who have problems getting shoes to fit properly over their children’s AFOs. The
shoes run from children’s size 5 for toddlers up to kid’s size 3.
Originally designed for ease in dressing toddlers, they were adapted to fit over
AFOs after the company received many requests from frustrated parents. Though
not cheap, their pricing is reasonable and shipping is free for your first order. Instructions for measuring feet are provided on the
website http://www.hatchbacksfootwear.com/sizing-chart/ and they provide a toll free number (800-936-0511) if you have questions. To read more about these shoes, visit their website at http://www.hatchbacksfootwear.com/about-us/
Vol. X Issue 3
Page 2
Summer Event
Inaugural Gabriel Luke VandenBerg Golf Outing — Aug. 10
It was a bit of a nail-biter the morning of August 10th. It started
out drizzly and cool in Ada, Michigan, but the day improved as the
hours passed and the Golf Outing was a tremendous success. Jeremy and Melissa VandenBerg hosted a wonderful fundraising event
in honor of their adorable son, Gabe, and Egypt Valley Country
Club was the place to be.
The 140 golfers who participated were treated to a cook-out
lunch at 11:30 a.m., eighteen holes of golf and a Bar-B-Que dinner
at 6:00 p.m. all for $150. During play, “mulligans” were sold for $5
each (non-golfers may have to look that one up) and participation
in skills competition was priced at $20. Yes, there were also wonderful raffle prizes and a hole in one
would have won someone a Mercedes (maybe next year.)
Sponsor packages ranged from $250 - $2500, and included tournament sponsor, research sponsor,
education & advocacy sponsor, golf cart sponsor, hole sponsor, watering hole, and beverage cart.
We are so grateful for the Vandenberg’s efforts and their amazing accomplishment of raising more than $37,000 for the PMD
Foundation. They plan on repeating this event annually, so all you golfing PMD supporters in the Midwest should join us next year.
Playgrounds for Everyone
Many of you are familiar with the great work being done by Natalie Blakemore and “Unlimited Play” in creating accessible playgrounds “Where limitations are forgotten and differences are celebrated.” Morgan’s Wonderland is also fairly well known as “A special place for special friends.” Sadly, not everyone is near enough to Missouri (or Breese, IL or Stoughton, WI or San Antonio, TX) to
take advantage of these wonderful sites.
Federal requirements of the Americans with Disabilities Act (ADA), passed in the 1990’s necessitate that all newly constructed or
modified public playgrounds include equipment that provides opportunities for children with disabilities to interact with their “normal”
peers. Unfortunately, meeting the proposed guidelines set by the ADA multiplies the cost of playground construction and many local
governments feel that the price of creating a new public play space is beyond what their budget allows. Luckily, frustrated parent
groups (like “Unlimited Play”) have stepped up to the plate and raised the necessary money to make such parks a reality.
The trick is, how do you find these individual play spaces scattered around the country? Well, National Public Radio (NPR) took it
upon themselves to collect the names/locations of many of these playgrounds. They compiled their initial list with data provided by
Mara Kaplan of accessibleplayground.net, members of the National Recreation and Park Association, PlayCore Inc. and Leathers and
Associates. In addition, they solicited suggestions from their listeners to expand their data. Now, you can go to their website at
http://www.playgroundsforeveryone.com, enter your zip code or city and state to find any accessible playgrounds in your area (in the
US.) Brooklyn’s Playground in Pocatello, ID and Clemyjontri Playground in McLean, VA are just two examples of highly accessible
parks. If you are computer savvy enough, they even have a .csv file you can download into a spreadsheet to see their entire list of
over 2800 playgrounds with varying accessibility. If you live in Canada, go to http://www.accessibleplayground.net/canada/ to find
any playgrounds in your area.
Roller slides and tables, merry-go-rounds, nest swings, large scale harness swings and even swings that can accommodate and
“lock in” a wheelchair are available at many of these sites. Every child deserves the chance to have fun interacting in a safe and appropriate environment with their friends. These wonderful places allow just that.
Vol. X Issue 3
Page 3
Fun Fall Recipes — Let The Kids Help
Witch’s Hat Cookies
Ingredients
1 package (11.5 oz) fudge-striped shortbread cookies (32 cookies)
Hershey's® Kisses® brand milk chocolates, unwrapped
1 tube orange icing
Attach 1 chocolate candy kiss to the chocolate bottom of each cookie, using decorating icing.
Pipe a ring around the bottom of the kiss. Voila!
Finger Sandwiches
Ingredients





Thin sliced white bread, crusts removed
Soft margarine
Cream cheese or peanut butter
Almonds
Strawberry Jam
Gently flatten the slices of bread with a rolling pin to make them more pliable.
Spread with a little margarine and some cream cheese or peanut butter.
Roll up the sandwiches and make three indentations with a blunt knife to form the finger joints.
Trim the ends of the fingers into a 'V' shape and stick an almond on to each tip with a little cream
cheese to form the nails.
Now for the gruesome bit—add a dollop of strawberry jam over the end of the finger for the blood!
Halloween Jello Worms
1 6 oz package red jello
3 1/4 oz packages unflavored gelatin
3 cups boiling water
100 flexible drinking straws (work best to give the ripple “wormy” effect)
3/4 cup whipping cream
12-15 drops green food coloring
Combine gelatins in a bowl, add boiling water and stir until completely dissolved. Chill until lukewarm (about 20 min.) Straighten straws
and pack tightly into a container with ends touching the bottom (ie. an empty quart milk carton or tall, wide glass), put a rubber band
around them to hold them tightly in the container for best results. Blend the whipping cream and food coloring with the cooled gelatin
mixture. Pour liquid into straws. Chill until firm (minimum 8 hours.) Once firm, pull straws apart. Run hot tap water for 2 seconds over
3-4 straws at a time. Starting at the empty ends, push worms from straws with rolling pin, or use your fingers; lay worms on waxed
paper-lined baking sheets. Cover and chill for at least 2 hours, or up to 2 days. Can stay at room temperature up to 2 hours. Enjoy!!
Gobbler Treats
Ingredients
 1/4 cup butter*
 10 oz marshmallows
 6 cups rice crispy cereal
 1/2 cup peanut butter (can be omitted)
Decorations
 Candy Corn
 Whopper or other round chocolate candy
 Broken nut (with pointy end)
 Dried cranberry or cherry
 Black frosting
DIRECTIONS:
Melt butter in a pan over medium heat (with peanut butter if using). When melted, add marshmallows and stir until melted. Remove
from heat. Add cereal and mix well.
While still warm, use your hands to form the mixture into small balls. You may need to squish these down slightly so that there's a flat
part on the bottom, in order to help the "bird" balance.
Then use additional peanut butter or more melted marshmallow for "glue" to tack on the candy corn (feathers), Whopper (head), beak
(nut), little red waddle (dried cherry), and then use black frosting to make the eyes.
Vol. X Issue 3
Page 4
Fundraising – Share the love this fall...
TRICK OR TREAT FOR PMD
Some of you may remember a time when you carried a little orange box around on Halloween
and collected change for UNICEF. The little bit of money you collected did not seem like much,
but when you brought it to school and it was all added together, it often became a significant
amount. Well, we’d like to apply that same principle to the upcoming holiday. We have many
PMD families and friends in our group, and if everyone collected just a little, it could end up
being quite a lot. It’s also amazing how much can be raised in your workplace by setting a box
on your desk. Not only that, but if people ask what you’re collecting for, it gives an opportunity
to spread awareness about this disease that affects our sons, brothers, cousins, uncles and
friends. If you click on this link, you will find a pdf you can print out to cover a small coffee can
(or tissue box) showing that your efforts are supported by the PMD Foundation with the hope
of spending these funds to further our research programs. You can then either make your donation online via our website or mail in a check to the address on the back page of this newsletter. This is a fundraiser everyone can do with very little effort. All contributions are appreciated!! Every little bit helps!!
SUPPORT THE CAUSE —
IT’S EASY TO DONATE
The Foundation is a non-profit 501(c)3 organization. Your contributions are tax deductible to the extent allowable by law. ALL
participants of The PMD Foundation serve
as VOLUNTEERS, however, operating
costs and research funding are expenses we
face to keep the Foundation viable. We need
your financial support, it’s that simple.
Click here to make your contribution by
credit card or Paypal. If sending a check,
please use the address on the last page of
the newsletter.
It’s too bad money doesn’t grow on trees...
AMAZON SMILE SUCCESS!!!
Yay! We’re already seeing some success with Amazon Smile fundraising. Now we
just need to get all you online shoppers onboard. Most of you use Amazon.com
when you do your online shopping anyway. Amazon has excelled at making shopping effortless and they have most everything you would need. But did you know
that they help charities on a daily basis? All you have to do is log on to
http://smile.amazon.com and enter the PMD Foundation as your charity of choice.
Then use the same address when doing your Amazon shopping and .5% of eligible
purchases will be donated to the Foundation. If you forget the smile part the next
time you log on to Amazon with that computer, they will remind you and link you to
the donation site. It is the same company, same prices, same website. There isn’t
an easier way to help raise funds by doing something you already do. Make your
shopping even more meaningful and get your friends/family involved too! So the
next time you need to do some online shopping, just remember to Smile.
DONATION LINE LLC
(vehicle donation center)
Use Donation Line to donate cars, trucks, motorcycles, RVs, boats, jet skis or snowmobiles to
benefit the PMD Foundation and get a tax deduction for yourself. They provide FAST, FREE
pick-up of your vehicle (running or not) and have an A+ rating by the Better Business Bureau.
The process can be initiated 24 hours/7 days a week by phone at 1-877-227-7487 (ext. 2434
for PMDF) or by filling out their online form. A towing agent will contact you to arrange a pickup time, and provide you with a pick-up receipt. The vehicle will be sold at auction and the
PMD Foundation will send you a tax-deduction letter upon receiving the funds. Get more information about tax deductions for donated vehicles, at:
www.donationline.com
iGIVE
(online shopping)
Shopping or searching for purchases through iGIVE can result in a donation for the PMD Foundation. A penny or more per search, a $5 bonus for your first online purchase and up to 26%
of your purchases will be contributed to the PMDF.
Over 700 stores participate in this donation program, including Amazon.com, eBay, Staples,
JCPenney, Barnes & Noble, Overstock.com, Office Depot, QVC, Home Depot, HSN, Gap, &
NORDSTROM. Plus, as an iGive member, you SAVE money with exclusive coupons and free
shipping deals.
It's easy. Select the PMDF as your favorite cause, register with iGive and shop at brand
name online stores through the iGive Mall. Logon today to:
www.iGive.com
Vol. X Issue 3
Page 5
The PMD Foundation
1 Green Tree Center
10000 Lincoln Drive East,
Suite 201
Marlton, NJ 08053
Together, we can make 2015 the
year that a treatment is discovered, leading to an eventual cure!
Please make a donation either:
Phone: 609-443-9623
Email:
[email protected]
Website:
www.pmdfoundation.org
By visiting our website to make a safe
and secure contribution
www.pmdfoundation.org/donation.htm
Or
Our Vision:
A World Where There Is No PMD
Our Mission:
•Provide support for families affected by PMD
•Raise public awareness and support for PMD
•Fund research of Pelizaeus-Merzbacher Disease
By clipping the following coupon and
mailing it with your check
My Donation
I would like to support the PMD Foundation’s mission of family support, awareness and research.
Enclosed is my tax-deductible donation of $__________.
I would like these funds designated for __________________________________________
Name: _____________________________________________________
Address: ___________________________________________________
City: _____________________ State: ______ Zip: _________________
Please detach and mail with your contribution to our Controller’s address at:
The PMD Foundation
1059 Mosefan Street
Franklin Square, NY 11010
THANK YOU FOR YOUR SUPPORT!